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  1. Lucibee

    UK study - Glasgow - CISCO-21 study of exercise for Long Covid

    This study has now reported: Resistance Exercise Therapy After COVID-19 Infection Berry et al. JAMA Network Open 10 Nov 2025 https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2841264 Dr Harriet Carroll (aka @angryhacadamic on SM) has written a blog about her interactions with the...
  2. Lucibee

    Preprint Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206, 2024, Edwards (Qeios)

    There is a lot of evidence for anchoring biases and their effects: https://en.wikipedia.org/wiki/Anchoring_effect The reason I was nervous is because I suspected that you would see me as a grouse rather than a dove. Please consider that *that* anchor has biased how you read my post. I was...
  3. Lucibee

    Preprint Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206, 2024, Edwards (Qeios)

    As an editor (something I do have expertise in), I should probably make some comments, but I feel very nervous about doing so. I can see the perspective of the authors of the open letter. There are problematic aspects of your letter @Jonathan Edwards from an editorial perspective, which mean...
  4. Lucibee

    Self-guided digital behavioural therapy versus active control for [FM] (PROSPER-FM): a phase 3, multicentre, randomised controlled trial 2024 Arnold+

    Here's a press release about the trial from November 2023, which provides a little more info: https://swingtherapeutics.com/swing-results-stanza-digital-therapy-for-fibromyalgia-symptoms/ I was tempted to comment more about this trial, but without seeing the whole paper, it's tricky. They...
  5. Lucibee

    Review Persistent physical symptoms: definition, genesis, and management 2024 Löwe, Rosmalen, Burton et al

    One of the things that really annoys me about papers like this (and this entire area) is the rewriting of biology and biological language that is going on. I'm actually quite shocked that The Lancet is allowing it to happen. They used to be absolute sticklers for making sure that if a word was...
  6. Lucibee

    Effectiveness of a symptom-clinic intervention ... multiple and persistent physical symptoms, 2024, Burton, Deary et al

    Just to confirm, the Fryer et al. paper does outline in much more detail what the intervention involved, by way of describing the training of the 5 GPs who gave the intervention to patients in the Burton trial. The following section describes what techniques were taught to patients: It's...
  7. Lucibee

    Effectiveness of a symptom-clinic intervention ... multiple and persistent physical symptoms, 2024, Burton, Deary et al

    @Hutan It looks like they've used the upper portion of the scale - which should be graded 1-7. Table 9.2 has a typo - saying that it scores 0 to 7 in the right hand column. But it's clear from the questionnaire itself that 1 should be "No change (or worse)" and 7 = "A great deal better" because...
  8. Lucibee

    Effectiveness of a symptom-clinic intervention ... multiple and persistent physical symptoms, 2024, Burton, Deary et al

    £1.5million spent on this (https://www.dev.fundingawards.nihr.ac.uk/award/15/136/07) This is the protocol paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9668014/ But I'm having trouble finding out exactly what "The Symptoms Clinic" does in the 90-110 minutes it has of a patient's...
  9. Lucibee

    Effectiveness of a symptom-clinic intervention ... multiple and persistent physical symptoms, 2024, Burton, Deary et al

    In the appendix (pdf link: https://www.thelancet.com/cms/10.1016/S0140-6736(24)00700-1/attachment/92cea412-1aa4-4f3b-82d5-0b3e51d62615/mmc1.pdf), they have the scale the other way around: "0= No change or condition has got worse; 7= A great deal better" But the form itself is very confusing...
  10. Lucibee

    Effectiveness of a symptom-clinic intervention ... multiple and persistent physical symptoms, 2024, Burton, Deary et al

    This makes me so cross! What I'd like them to have done is to maybe do a trial where they use their "intervention" as the placebo control, and do some proper work-up and investigation in a true intervention group. But the problem is always going to be, unless they actually find out what is...
  11. Lucibee

    Effectiveness of a symptom-clinic intervention ... multiple and persistent physical symptoms, 2024, Burton, Deary et al

    It found a *between-group* difference of 1.82. The median scores at baseline in both groups were 15 - but also need to consider that entry criterion was a score between 10 and 20. They excluded those with high (20-30) or low (0-10) scores. This improved (on average) at 52 weeks to 14 in the...
  12. Lucibee

    United Kingdom: Teenager Ella Copley's experience with severe ME/CFS

    Is there any update? It all went very quiet after this. Were the family silenced?
  13. Lucibee

    NHS Wales - Primary fatigue service

    This page provides a bit more info: https://ctmuhb.nhs.wales/services/primary-fatigue-service/more-about-the-service/ This service is only available to those in the Cwm Taf health board area (Merthyr and S Wales valleys), not all Wales. Also... This is what ME Association and other ME...
  14. Lucibee

    'Curable' mind-brain training app and ME/CFS, including the role of Fiona Symington

    Thanks. I will if I do. And in case anyone can't see the whole thread, here it is (click thumbnail):
  15. Lucibee

    'Curable' mind-brain training app and ME/CFS, including the role of Fiona Symington

    Supplement 2 in the paper above is actually really interesting. It gives a fairly full description of what PRT is (in eAppendix 2). But first, this section in eAppendix 1 caught my eye: Key quote from eAppendix 2: Which is fine if it is "just" a central process and not a physical problem...
  16. Lucibee

    Management of severe ME/CFS in children and young people in the UK: a British Paediatric Surveillance Unit study, 2024, Royston et al.

    "Contributors: This study was conceived and designed by Professor Esther Crawley and AB [Amberly Bridgen]." Authorship is, and should be, about who actually writes the paper. She probably takes the same line as Wessely - already on sooooo many papers that she doesn't need her name to be on any...
  17. Lucibee

    Management of severe ME/CFS in children and young people in the UK: a British Paediatric Surveillance Unit study, 2024, Royston et al.

    This seems to be an offshoot of the same study @dx-revision-watch.77 mentioned over here: https://www.s4me.info/threads/graded-exercise-therapy-compared-to-activity-management-for-paediatric-cfs-me-pragmatic-randomized-controlled-trial-2024-gaunt-crawley-et-al.37488/page-4#post-519144 The 92...
  18. Lucibee

    Graded exercise therapy compared to activity management for paediatric [CFS/ME]: pragmatic randomized controlled trial, 2024, Gaunt, Crawley et al.

    Doesn't stop them including identified severe patients in FITNET though, does it? Also, a lot of studies are done pre-hoc/post-hoc. Studies that have already been done will get retrospective approval; studies not yet done will get done on the back of a previous study's approval, etc, etc...
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